Carbimazole - RHR

[nooneimportant]

Morning all

Quick question and not urgent ... some of you will know from previous posts I don't do well on this medication for Graves which I've now been taking for a bout a year (small rash on chest, depression, weight gain, swelling in the thyroid, face, feet and hands, struggling to sleep, body temp up and down massively) all of which goes away when I don't take it - yes I've told my consultant and yes of course it's all in my head and can't possibly be anything to do with this medication .... anyway ... latest thing that's caught my attention is that when I take the meds my resting heart rate INCREASES by about 10 beats per minute when I don't it DECREASES. I can't make head nor tail of it, my sister, a nurse, thinks it's a reaction, and the consultant brushes off everything I say so I just don't converse with him anymore ... anyone else had this?

I don't know what my thyroid numbers are currently but latest readings are as follows:

02.01.24

TSH 0.01 - T4 16.8

12.02.24

TSH 0.01 - T4 12.9 - TRAbs 1.95

12.03.24

TSH 0.04 - T4 14

He doesn't test anything else TSH range for lab 0.27 - 4.5 T4 range for lab 11 -23 TRAbs should be under 1.75

[pennyannie]

Hey there again :

So, have you asked to be switched to the alternative AT drug Propylthiouracil - PTU ?

At last we have a positive for the Thyroid Receptor antibody so a confirmation of a diagnosis of Graves Disease.

As to these symptoms being experienced it's difficult to say but your T4 is looking low but without a Free T3 reading drawn from the same sample - the information - limited -

What was your initial dose of the AT drug - has this now been reduced down at all ?

You might like to read around on Elaine Moore's website - elaine-moore.com

I think I've sent you these already - but just so you know -

pubmed.ncbi.nlm.nih.gov/338...

ncbi.nlm.nih.gov/pubmed/306...

[nooneimportant in reply to pennyannie]

Morning Pennyannie

Thank you for responding. No I have little communication with the endocrinologist and as I've responded so badly to this medication I am not really keen on changing it - oddly. I just really don't want to relive this nightmare again with yet another poison ...

TRAbs were confirmed when I was diagnosed with Graves nearly two years ago so I've always known it was Graves - never any dispute on that one although he tested again to see if they'd come down which they have quite significantly from 3.58 in March last year ... how long that will last who knows ...

I'm not sure why he won't test the T3 🤷 seems obvious to me to do all thyroid function but he doesn't seem to think it's necessary. I have thought of just monitoring it all privately but that's an expense I can't take on right now to be honest.

They originally put me on 20mg Carbimazole daily, but I never took more than 10mg due to sickness and symptoms. Was on 10mg and symptoms gradually got worse and worse then after Febs readings and the hope that someone would shoot me in the head he reduced to 5mg daily. Symptoms eased for a few weeks and then began to return again so I reduced down to 5mg and only take on Monday Wednesday and Friday .... at the weekends I feel much better, less swelling, etc, during the week not so great. If the meds didn't make me feel worse than Graves disease does this wouldn't be so much of an issue, but honestly, I'd rather Graves take me at this point 🥴 My GP is about as useful as a colander for an umbrella, who stated that a T4 of 16 was still very high 😤🙃

I don't find Elaine Moore's stuff particularly helpful or in anyway enlightening personally although I appreciate it helps others on here.

Basically I do everything I meant to, I take all the vitamins I am meant to, I walk 7 miles a day (for mental and physical health) as well as stretching etc and eat well and clean (apart from dark chocolate and they can balls if I am giving that up). The only and repetitive thing that makes me swell up, feel miserable, disturb my sleep and now increases my heart rate is the medication 🤷🤨

[pennyannie in reply to nooneimportant]

OK then - sorry if I've been repeating myself - sometimes I find it difficult keeping track of everyone's journey - ad yes, I should look back and stop jumping in with my size 9 feet.

I didn't find Elaine Moore until around 8 years post RAI when more ill than I had ever been and getting nowhere through mainstream medical.

I particularly liked her holistic and alternative treatment suggestions along with getting an understanding of myself and realising that I had been undiagnosed hypothyroid with dyslexia and left handedness from a child in the baby boom years in 1947 -

and carrying ' stress ' in all it's guises for most of my life and only diagnosed with a thyroid issue - Graves Disease when 56 - when suffering with insomnia for 3 months - which I now see was triggered by a man I employed at the time as my assistant manager who physically and verbally abused me - one night when we are closing down the unit together - and I just froze.

I then shrugged this off as best I could and went down the company disciplinary route which was somewhat futile as he said to me at the time - there are no witnesses :

Anyway all I'm trying to say is reduce stress as much as you can and look ' inside ' :

[nooneimportant in reply to pennyannie]

Hi Pennyannie

Please don't apologise - I tend to respond to each sentence so sometimes comes across quite blunt but just trying to make sure I've answered everything asked - certainly don't expect ANYONE to trawl through previous posts etc lol

That sounds like a terrible ordeal that you've been through I hope things have improved for you now?

Although doctors have jumped all over the fact that my Grandmother had hyperthyroidism, I know for a fact that mine was actually triggered from ten - twenty years of relentless trauma, I also noted that I am allergic to the sun (no joke I have Polymorphic Light Eruption) and I was allergic to my dog who has very recently passed, I don't think either of these issues helped.

I have since diagnosis moved house, care professionals, jobs, and cut A LOT of people and stress out of my life, so I've everything crossed that within time my body will adjust and heal - which might be happening hence my reactions to the medication 🤷, and although I understand that traditional medical intervention is sometimes necessary I feel let down by the medical profession as they've really brushed off any attempt to work for myself.

[pennyannie in reply to nooneimportant]

Yes - we are a minority of people in the overall scheme of things - and likely that fact that with an AI disease there is no cure and that all we are offered is an AT drug to buy us time to try and offset the worst of symptoms being tolerated.

[Torquaygirl]

just in case and it may have been done already, do you think it could be that you might have another AI disorder?

Gp could do bloods for this if it’s something not done, I have Sjogrens and am prone to rashes, etc etc, won’t bore you with it all. But AI generally like to be friends with each other, unfortunately. I am on a low dose carbimazole because I am on a toxic heart drug for AF as TSH very low when I was admitted. I am sure Sjogrens caused it all, I don’t have any positive antibodies mind. 30% of people with Sjogrens get thyroid problems.

If not had bloods done you need ANA, ENA rheumatoid factor and CRP doing.

I have not had problems with carbimazole other than not able to lose weight.

Good luck